Long. Difficult. Discouraging. My Crohn’s journey has been all of this and more. But this week, I actually thanked God for my Crohn’s Disease.
Trust me, I know you’re thinking “what in the world?” right now and I get that. I was too at first. But I’ve been studying and praying a lot about issues in life. I’ve seen how being weak and having to depend on God’s grace has taught me to not be so much thinking that I could do it all myself. That’s my personality. Just tell me I can’t do something and I’ll prove to you that I can!
I came to the realization that the convenience and comforts of this life were far more important to me than I wanted to admit. I was so focused on having a “dream come true” life right here and now that I wasn’t really planning on the eternal life spoken of so much in the Bible.
Do I wish I get could get through a day without pain? You better believe it! No more fatigue, anemia induced hair loss or plaguing side symptoms of Crohn’s Disease? Of course! But I already have that promised to me. There are a lot of other folks out there that don’t have any hope whatsoever. They look at the crazy mixed up world around us and think this is all there is. And that’s a pretty pathetic outlook on life.
So I’m going to quit spending so much time praying for healing and understanding why I have to suffer with Crohn’s and focus instead on the fact that I know of a future without Crohn’s. I know of a future without death, suffering and pain. And it’s about time I shared this hope with others who need to hear it.
Pity party over. Time to spread some good news. This isn’t all there is. You can have more. It’s yours free because of something called amazing grace!
A friend of mine has recently done a very wonderful, yet very brave thing. He openly admitted he has recently been struggling with depression. Kudos to you friend. Not an easy thing to bring to the forefront. Most of us prefer to stay in denial.
Crohn’s Disease has taken its toll on me, but depression was one of the areas I refused to allow it to take me. But it did. So I did the only thing I knew I could do, deny it. It wasn’t easy to see at the time and I’ll admit, it is still a struggle for me. I’m not a sit on the sidelines kind of person. I’ve always been right in the middle of stuff enjoying life to the fullest. Being sidelined by a disease has been attacking me at the very core of who I am and who I always thought I was.
A patient God and a very loving husband and family have been going through this with me. Karl is actually glad that I’m finally admitting how much I had struggled during some of my lowest points with all that Crohn’s has taken from me. The best way I fight back? Finding every single way I can enjoy life to the fullest again – no matter what others think. I suppose it is best summed up in my thoughts that I shared with my friend.
When a child hears a happy tune – they giggle and dance for joy. When they get a favorite toy – expressions of happiness unlimited. When they see someone hurting they are ready to give all – immediately. Being an adult really sucks because so many people tell you to grow up. But I was much happier when I giggled and danced and gave all I had.
Crohn’s still gives me bad days, but I’m determined to giggle, dance and give like a little child, because life was meant to be lived happy and abundantly!
There are a multitude of movies that explore, in one flavor or another, the fantasy of a world where there is no anger, lust, frustration, hatred or jealousy. It’s the usual, and futile, quest for Utopia, often an old B Movie, but modern ones exist as well.
The fact of the matter is that these things are very real human emotions. A future world where there is no undesirable emotion displayed can only mean one thing: look out because one of these days it’s going to blow! Things kept bottled up inside result in high pressure and highly volatile environments. In no way am I advocating wrong methods of displaying some of these emotions, especially anger. But there are other ways to take out your frustrations instead of harming yourself, others or property.
Today, I want to put my squatty fingers on the throat of Crohn’s Disease and strangle it until it breathes no more. But since that would be a not appropriate display of my frustration with this autoimmune disorder, I shall have to find a better way to vent my hurt and frustration. I’ve heard that tires and sledge hammers are a great way of getting out anger.
Wait a minute. Crohn’s has left me with little strength or energy today. I guess I’m back to strangling. While I’m at it, I’ll try to get rid of all the other autoimmune disorders as well. Couldn’t hurt.
So I’ve embarked on this new 10 week program called Creation Health. It talks about your whole health by looking at C R E A T I O N, Choice, Rest, Environment, Activity, Trust, Interpersonal Relationships, Outlook and Nutrition. It is going to be an interesting journey.
One of the beautiful or scary, depending on how you look at it, aspects of Creation Health is the personal evaluation. We take a short quiz to assess where we are at now and then again at the end of the 10 weeks. Why? To see if we’ve managed to learn anything and more importantly – apply it to our lives. Why? Because they want to know they’ve made a difference in offering this program to us.
Think about it for a moment. Isn’t this true for all of life? It can’t just be something we’ve learned, but something we’ve put into practice. What if everything we did had a before and after evaluation so we could see if it was really making a difference or not? Ten weeks on the Parent Teacher Organization, Defensive Driving Class, Fill in the blank Disease Awareness (I can recommend two if you don’t know any: ADEM and Crohn’s Disease). At the end, are we any better off than when we began? Did we take the time to put it into practice instead of merely learning it?
Ten weeks. I’m going to see what happens. God help me put what I’m learning into practice! If you’d like to know more about the program yourself, visit http://www.creationhealth.tv.
I’m running out of options and the few remaining aren’t that promising. My primary care physician and I agree on that. He’s great about realizing I’m not your average patient that you can just pump with drugs and so he searches for more natural remedies for me. I’m a bit of a medical freak and I know it.
Today he asked me how my stress levels were. Ha! Yes, it is true that reducing stress in a patient with Crohn’s Disease can be very beneficial to their guts. I’ll admit it – stress goes straight to my gut and I can literally feel it. My husband keeps an eye out for me and has even called me on some stressful situations and said it would be better for me to back out or avoid those situations. I’m so grateful for his support, but sometimes, stress just happens.
I’m a pastor’s wife with three kids, one of which has an autoimmune disease that keeps us going back to specialists every 6 months for MRI’s and other testing. Nope, no stress here. Did I mention that my husband actually pastors two sister churches and that they are each doing a Vacation Bible School this year – different programs of course – and I’m learning parts for both of them? My oldest is working at camp for the summer and I miss him very much, but I hey he is a senior now and it’s time for this mom to get in on all of the senior class fundraising things – don’t wait for school to start. Time is money!!
I suppose that for me, some of those stresses are worth it. I’d be a fool to think I could truly remove all stressors out of my life and remain forever on an even keel. By removing stressors, I’d also be removing amazing parts of my life. This disease has already taken enough from me. I won’t let it take my life.
It’s never fun to get kicked out of the club. I got kicked out this week.
In order to stay on the study for Crohn’s Disease, I had to have a significant change in my numbers since the last injection of medication. I didn’t get it. Even though there was a 40 point change, it requires a change of 100 points or more to stay in the study. So I’m out of the club.
I was expecting it, because I’d been keeping my pain level journal and I knew the numbers wouldn’t add up right. Being dropped off the study wasn’t nearly as discouraging as the limited amount of options remaining for me in dealing with this beastly disease. So I allowed a mood of discouragement and just plain, “I don’t care” to take over for a couple of days. But I discovered something: it’s not fun to live like that.
I’ve had a couple of days of getting myself back together slowly and now it’s back to the drawing board. God has gotten me through so many bad times of Crohn’s and He will get me through this one as well.
Crohn’s Disease + cold = painful intestinal cramps. Needless to say, I don’t like cold air blowing directly on me. Today I spent an hour and a half in a facility that had problems with its heater. It was blowing out cold air. My jacket wasn’t enough and soon I had intestines in knots. It wasn’t fun.
Bad facility. They shouldn’t do that to people, right? In a sense yes, but in actuality – no. I am responsible for my special needs. Think about it for a minute. If we asked any and all business and facilities to make accommodations for every single special need out there – no one could stay in business. Does this facility need to get their heater fixed? That would be a huge yes!
But the greater burden lands on me. If I know that I get cold easily and it can lead to excruciating pain, I need to make sure I have a travel blanket with me. If I know that I get cold easily and do nothing about it – why should I start a crisis because I’m not warm enough?
Please don’t get me wrong. I’m not saying stop helping people. By all means, let us be compassionate and helpful to all we come in contact with. I’m all for compassion and going the extra mile. But it doesn’t change the fact that we are responsible for our own special needs. I have a diabetic friend that wishes his church would provide sugar free drink at their potluck meals in addition to the lemonade and fruit punch they serve. It would be nice if they did and they should try to do that, but in the end, he knows he has special needs and comes prepared.
So, I’m going to make sure I travel with a jacket and a blanket now, to cover those very sensitive intestines. It’s my responsibility.